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6 yr old w/involuntary muscle movements/jerks/twitches, Paroxysmal Dyskinesias? please help!

Wed, 05/14/2008 - 10:29

Hi! Does anyone have experience with a child having involuntary muscle movements in hands, feet, arms and legs? It's like a wave of motion/stiffness. We just met with a neuro, had an MRI which was normal except for a smaller hippocampus than normal? Regular, asleep EEG was normal. But we are waiting for the Digitrace/video 48 hour EEG results which should be more telling. In the meantime I thought I'd post.

 When he was a toddler, he often twirled his hands when excited. He also had a significant gross motor delay, speech delay, some stuttering on and off. My mother is epileptic (grand mal seizures) I am fine and no other family history. My son went through EI phys. therapy, speech and some sensory motor therapies - "graduated" from all, normal 6 year old otherwise, doing very well in school. But has these "spasms" while playing, walking - I don't count but I'd say close to 50 per day if not more. He does not do it when he sleeps. We were working with one doctor (sensory motor integration specialist) who felt this was some form of stimming but my son is not autistic, no longer delayed and he doesn't do it to self-soothe. He cannot control when the movements start, but we can "interrupt" or stop the movements by touching him, talking to him, etc. It is VERY frustrating. During the movements his hands twist, bend inward at wrist, stiffen - it looks like someone with MS perhaps...arms and legs move all over, his feet cross if he is standing and he has been stumbling. It's like he can't control his foot placement. Our neuro. is investigating possibly seizures, but I have also read about "chorea" and Paroxysmal Dyskinesias?? All of it frightens me. I am worried about him. I would say the movements come and go....there are times we don't notice them and then he has really bad days?! Interestingly when he is really "focused" (like at school) - it rarely happens.

I would love to hear about other experiences with this. I would think if it were seizures we wouldn't be able to "interrupt" the movements, however if they are very short ones, maybe they would be ending anyway around the time we try to stop them??

Would love any feedback! Thanks :)

Comments

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

Submitted by June3 on Wed, 2008-05-14 - 13:23

My 9 year old suffered with these movements as well last year beginning in March.  They started off by only minimal movements that were not apparent.  Within weeks they attacked him 20-30 times a day.  I was moved by my pediatrician to a neurologist who told me my son need PROZAC and totally neglected to look at my documented record of these movements.  According to the 20minute EEG he was negative of seizures. I followed by a psychologist who didn't recognize the episode and then a psychiatrist who dx him with  Sydenham Chorea.  1 week later my son had a GRAND MAL seizure and was in the hospital for 6 days.

I recommend you video tape your son.  That was most helpful when I showed the neurologist at the hospital. After the 4 day video EEG was completed it turned out my son is an epileptic with most of his activity at night.  The 20 minute EEG to this day is normal.  My husband's uncle was an epileptic as well. 

I think back to when my son was 3 and the teacher complained he had memorization issues.  During his education he couldn't read/comprehend as well.  In 2006 he suffered from severe depression that lasted 3 months and lost 15lbs.  The pediatrician dx him with the "blues".   Finally last year the moods swings followed the involuntary movements. 

 

Good luck and stay focused.  It took us close to 2  years before he finally was diagnosed.

 

 

 

My 9 year old suffered with these movements as well last year beginning in March.  They started off by only minimal movements that were not apparent.  Within weeks they attacked him 20-30 times a day.  I was moved by my pediatrician to a neurologist who told me my son need PROZAC and totally neglected to look at my documented record of these movements.  According to the 20minute EEG he was negative of seizures. I followed by a psychologist who didn't recognize the episode and then a psychiatrist who dx him with  Sydenham Chorea.  1 week later my son had a GRAND MAL seizure and was in the hospital for 6 days.

I recommend you video tape your son.  That was most helpful when I showed the neurologist at the hospital. After the 4 day video EEG was completed it turned out my son is an epileptic with most of his activity at night.  The 20 minute EEG to this day is normal.  My husband's uncle was an epileptic as well. 

I think back to when my son was 3 and the teacher complained he had memorization issues.  During his education he couldn't read/comprehend as well.  In 2006 he suffered from severe depression that lasted 3 months and lost 15lbs.  The pediatrician dx him with the "blues".   Finally last year the moods swings followed the involuntary movements. 

 

Good luck and stay focused.  It took us close to 2  years before he finally was diagnosed.

 

 

 

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

Submitted by tpup on Wed, 2008-05-14 - 14:29

Thank you both. I am so glad I posted here. I figured someone, somewhere must have similar story.

Should I call my regular pediatrician and go back into my son's history to see when he had strep? I've read about this condition brought on by the strepp. virus.

 Interesting - my son's 20 minute "in office" asleep eeg was negative. We will have results from the 48 hour videotapes one on Monday we think. The 48 hour one was also "on" while he slept both nights, with video of his face. He has also had very mild times (2 episodes) riding in the car where he has difficulty getting words out - almost stuttering but close to slurred speech too. It is odd. Both times happened when he was quite tired, riding home mid-afternoon from an activity.

 I wish I could post the video of him somewhere for you all to see?! We have a good 20 minutes of video clips of these movements. To be more specific...this is what it looks like:

 Example: walking to the bus at the bus stop. Walking normal and then this odd gait "attacks him". He goes up on his toes, arms/hands stiffen, feet cross while walking, wave of motion through arms, shoulders, hands...slight grimace in face - it looks like a sudden "attack" of M.S. or cerebral palsy....then it stops and he continues walking.

 Example 2: playing - he could be kneeling or standing, playing with airplanes...he "flies one" and "lands it" on table, steps back, and BAM - up on toes, writhing movements again, body going all over the place. He re-groups, continues playing.

 The movements happen in "clusters". When we did the Digitrace (48 hour) EEG, there would be 10-15 minute periods where we hit the "episode" button 8-9 times!

High stimulus areas seem to exacerbate it - Chuck E Cheese, his body goes wild looking at the games (!?!) - as though some time of visual stimuli is setting it off. Few years ago, things like fountains in Disney World - it was really bad. But now, it happens when he is simply walking to the car?! It has gone way beyond just "exciting" events triggering it. And the movements are worse :( Yet at his birthday party (tae kwon do class) we didn't see him do it ONCE.

I am so worried about him. He is a very emotional, sensitive child also and is very self-conscious now about the movements. After a "bad" movement, he'll say, "Mom, I don't feel good." He has never had the endurance of other kids - always the first to say "I'm tired"...and motor skills starting in infancy were all delayed quite a bit - walked at 17 months, crawled at 13 months....gross motor skills had to be "taught"...as in, "put your hand here, now move your leg here...". Normal movements were never just spontaneous for him. He started sensory motor therapy 2 years ago and when he was evaluated at almost age 4, he still had the palmar grasp when he crawled (turned under fingers)....was very delayed, and said to have the gait of an 18 month old. But he has caught up and is normal now/age appropriate - just not quite as "smooth" as other kids or as quick.

We just had regular bloodwork (CBC) and allergy to foods tested - all was normal and fine (soy, egg, dairy, casein, wheat, etc).

I have had several in the med. field tell me they feel it's more "chemical". Would love any more thoughts or stories...maybe I'll try to post video to youtube for a day or two and then delete it off so I can share these movements? Thank you all for your input.

 

Thank you both. I am so glad I posted here. I figured someone, somewhere must have similar story.

Should I call my regular pediatrician and go back into my son's history to see when he had strep? I've read about this condition brought on by the strepp. virus.

 Interesting - my son's 20 minute "in office" asleep eeg was negative. We will have results from the 48 hour videotapes one on Monday we think. The 48 hour one was also "on" while he slept both nights, with video of his face. He has also had very mild times (2 episodes) riding in the car where he has difficulty getting words out - almost stuttering but close to slurred speech too. It is odd. Both times happened when he was quite tired, riding home mid-afternoon from an activity.

 I wish I could post the video of him somewhere for you all to see?! We have a good 20 minutes of video clips of these movements. To be more specific...this is what it looks like:

 Example: walking to the bus at the bus stop. Walking normal and then this odd gait "attacks him". He goes up on his toes, arms/hands stiffen, feet cross while walking, wave of motion through arms, shoulders, hands...slight grimace in face - it looks like a sudden "attack" of M.S. or cerebral palsy....then it stops and he continues walking.

 Example 2: playing - he could be kneeling or standing, playing with airplanes...he "flies one" and "lands it" on table, steps back, and BAM - up on toes, writhing movements again, body going all over the place. He re-groups, continues playing.

 The movements happen in "clusters". When we did the Digitrace (48 hour) EEG, there would be 10-15 minute periods where we hit the "episode" button 8-9 times!

High stimulus areas seem to exacerbate it - Chuck E Cheese, his body goes wild looking at the games (!?!) - as though some time of visual stimuli is setting it off. Few years ago, things like fountains in Disney World - it was really bad. But now, it happens when he is simply walking to the car?! It has gone way beyond just "exciting" events triggering it. And the movements are worse :( Yet at his birthday party (tae kwon do class) we didn't see him do it ONCE.

I am so worried about him. He is a very emotional, sensitive child also and is very self-conscious now about the movements. After a "bad" movement, he'll say, "Mom, I don't feel good." He has never had the endurance of other kids - always the first to say "I'm tired"...and motor skills starting in infancy were all delayed quite a bit - walked at 17 months, crawled at 13 months....gross motor skills had to be "taught"...as in, "put your hand here, now move your leg here...". Normal movements were never just spontaneous for him. He started sensory motor therapy 2 years ago and when he was evaluated at almost age 4, he still had the palmar grasp when he crawled (turned under fingers)....was very delayed, and said to have the gait of an 18 month old. But he has caught up and is normal now/age appropriate - just not quite as "smooth" as other kids or as quick.

We just had regular bloodwork (CBC) and allergy to foods tested - all was normal and fine (soy, egg, dairy, casein, wheat, etc).

I have had several in the med. field tell me they feel it's more "chemical". Would love any more thoughts or stories...maybe I'll try to post video to youtube for a day or two and then delete it off so I can share these movements? Thank you all for your input.

 

Re: 6 yr old w/involuntary muscle movements/jerks/twitches,

Submitted by June3 on Wed, 2008-05-14 - 16:19

The movements you describe are exactly the same as what my son experienced.  The episodes would hit him at any time and even during his sleep he's wake up with these movements.

Like your son, my son's bloodwork was tested for the strepp virus.  Even after he was dx with epilepsy I still took him to be analyzed by an infectious disease doctor.  Everything pretty much boiled down to the seizure discorder.  It was amazing to me that these movements and his altered moods would be in fact epilepsy. 

I think that you should go back to your son's medical history as well as recall any unmet mildstones or abornormalcies in academics.  If one neurologist doesn't dx properly keep searching and don't give up.

The movements you describe are exactly the same as what my son experienced.  The episodes would hit him at any time and even during his sleep he's wake up with these movements.

Like your son, my son's bloodwork was tested for the strepp virus.  Even after he was dx with epilepsy I still took him to be analyzed by an infectious disease doctor.  Everything pretty much boiled down to the seizure discorder.  It was amazing to me that these movements and his altered moods would be in fact epilepsy. 

I think that you should go back to your son's medical history as well as recall any unmet mildstones or abornormalcies in academics.  If one neurologist doesn't dx properly keep searching and don't give up.

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